Wanting to Move Mom from MC to another MC

DotBern

Hello,

It's been sometime since I've posted. Now finding I need advice on moving mom from her current MC to another. I am an only child and mom is widowed for many years. She has been living in a MC residence for 14 months. As a brand new "stand alone" residence I was awed by the beauty of the new place and promises of exemplary care.

Her VD has continued to progress but she is still somewhat independent (needs lots of cueing and direction). She is ambulatory. I brought several concerns to the director about staffing issues (or lack thereof). over the course of her stay and lack of consistency and/or quality in her care giving here and there. The agreement boasts an overnight licensed nurse and hourly checks. I learned an overnight nurse is not always there and they seem to always be hiring. They are not transparent about this. There is much turnover in CNA's. I believe management is struggling. Being a new stand alone facility, they are clearly not an "established community". I fear my mom suffers because of this not to mention we are paying dearly for her stay.

After finally installing a camera (they are aware) I can prove overnight checks do not occur. Her care plan is not consistently followed as she is an early riser and will dress herself (therefore, showers or sponge bathing does not happen regularly). Regular toileting does not happen either. I stayed overnight with mom once as she had an early morning dr. appt. I found the one CNA sleeping at 4:30am. Unbelievable! I tend to give her a shower when I know she hasn't had one in a week. I found she wet the bed overnight once and the CNA put a towel down with a new top sheet and the bed never got properly cleaned the next day. Towels were still in the bed the next day. I went in and stripped the bed and remade it. I understand no one will ever give my mom the attention and care I give her. but I feel she deserves better. I am now her voice. I don't always find the CNA's are as caring or successful in redirecting. The activity staff are wonderful but can't do it all. She always wants "to go home" and tells me she is not happy there. I realize this is a common theme among PLWD.

After writing a letter recently to the owners and director, instead of verbally communicating my concerns, I have not had a resolution or a meeting to discuss further. It's been a week. The Resident Care Director emailed me suggesting having the overnight CNA get mom up and dressed at 6am as she is an early riser. That was one of my suggestions written in the letter. I agreed and yet I don't see it happening.

There is something not quite right going on in the facility, either the director is not experienced enough to run the place or the private owners are preventing her from doing her job appropriately. I became a certified dementia care teacher over the last year in order to connect better with my mom and understand what she is going through. I don't find many of the CNA's have adequate dementia training in my opinion.

I decided to research and tour other facilities the last few days. I found one 20 minutes away (instead of the 10 min. distance of her current place), that gave me a good feeling. Armed with many questions, they were able to adequately and promptly answer all. They have accountability built in assuring checks occur and adequate staff to resident ratio. Many long time staff, they are one of several MC residences and are well established. I'd like to move mom, but now worry about breaking her lease but feel I have enough documentation to show they are not living up to the standards we were promised. I am also VERY CONCERNED about what this move will do to mom. I know change is hard for them. I was truly hoping my concerns would be addressed and she would continue to stay there. Now I realize their lack of responding to me speaks volumes. I've also learned there are several other families touring other facilities too and three residents have transferred already. This was eye opening.

Thank you for reading my lengthy post. Sorry if I rambled on and on. Your thoughts are greatly appreciated. Has anyone else moved a LO from one facility to another? How did it go? Were you able to break your lease without issue? Did your LO settle in OK. Thanks in advance.

M1

Hi Dot. I moved my partner from one facility to another about a year ago, and she has done very very well with the change. She was at the first place for 13 months and has now been at the new place for 11 months. My concerns were similar, there were issues with the quality of care, as well as with communication with me; an additional concern was that the first facility was physically fairly small, and my partner is claustrophobic. There were no indoor spaces other than her room where she could get away from other residents.

The transition was very smooth and did not disrupt my partner at all: in fact, she has no memory of the first facility whatsoever, so she was not fazed by change of personnel or acquaintances. Not only has the care and communication been better, but she is happier with the bigger space, with more opportunities for independent exploration and going outside. She is not one for group activities of any sort. She still wants to come home with me when I go to visit (3-4 times per week), but at the other facility I was not able to visit alone at all because she was so enraged and wanted to leave constantly.

So I would support your choice and say to trust your instincts.

DotBern

https://alzconnected.org/discussion/comment/202658#Comment_202658

Hi M1,

Thanks so much for sharing your experience. Sounds like you went through a similar experience, My gut is telling me it's time to make the move. I'm so glad things worked out for your partner and she is happier. I'm keeping my fingers crossed my mom will feel more comfortable as well. Did you run into any resistance from the director when making the move? I feel I've given them so many opportunities to address my concerns, yet nothing changes. Thank you for your insight. I'm definitely leaning towards moving her.

M1

Yes, I definitely ran into resistance from the first facility---I honestly think they didn't want to lose a private pay customer, offered to give me a discount: all this after multiple attempts to address my concerns!! it was way too little, too late, and so obviously commercially driven that it just reinforced that I was making the right decision. The timeline was that I told them around January 2023 that I was looking to move her--and the actual move did not happen until the end of April. When I was notified around April 1 that we actually had a bed at the new facility, that's when the pressure tactics really started. I just turned a blind eye.

I think keeping competent staff remains a big issue across the board. But it doesn't surprise me that a new startup place would have such trouble. Unfortunately i think you are not alone in this, many of the newer places (and after all, it is a growth industry) are counting on slick furnishings and advertisements to fill their beds. As I said before, trust your instincts.

DotBern

https://alzconnected.org/discussion/comment/202680#Comment_202680

You're so right! I asked to speak with the director today and was told that she is busy in meetings for most of the day. I decided to leave my letter giving a 30 day notice. Haven't heard a peep from them yet. I want to make sure I'm not in for a battle over the agreement. Not sure they have a leg to stand on after what I've dealt with for so long. Thanks again for responding. Bottom line, we are the voice for our LO and must make the right choices for them. The place I'm moving her to is much more established and I, too, think that's the biggest problem they're having at this point.

Emily 123

DotBern, follow up by email today if you haven't heard from them. 'Just touching base to make sure you received our 30 day notice'. My mom took a turn for the worse right before Christmas and they completely dropped the ball in follow thorugh and couldn't support her at the level of care she needed. She was quite debilitated, so I got her out the door to the new place by telling her the doctor wanted her to have some inpatient rehab 'just up the road'. Best move ever. If you're unhappy with the care it's ok to move her. Her needs will only get greater, so better to be at the place that can handle it.

Smilescountry

You might be surprised how well your mother does in the new facility. She might have been more aware of how she was treated or ignored than you realize. Being where she will receive good care might good all-around.

DotBern

https://alzconnected.org/discussion/comment/202839#Comment_202839

Yes, they did respond the next day saying how sorry they were to hear we were moving mom. I met with them briefly as they were hoping to change my mind. I told them a little too late to make amends and let them know something is not working at their facility. They director agreed they are struggling with good quality help. I received no issue with the 30 day notice. She is able to move in to the other facility as of 4/1, so I'm hoping to move her well before the end of the 30 days.

After speaking with several resident family members at the new facility I'm moving her too (given to me as references), I feel even better about my decision. Everyone told me how caring the staff is and that although nothing is ever perfect, they are comfortable and confident their loved one is in good hands. Plus the facility let me know that she will be cared for right through end of life which I don't think the other place is equipped or able to do although they say they can. They haven't been able to handle her moderate needs, I'm not trusting they could do anything better with more progressive needs even at a higher cost.

My next issue will be moving her and whether to be honest about moving her to another place or not. My plan is to have her go out with a close family friend to lunch and perhaps visit with her sister nearby while I get the entire move done in a few hours. I'm hoping to have all her things set up in the new place before bringing her in. She is aware enough to recognize she is in a different space. I like the reasoning you used with your mom about inpatient rehab or something similar. I'm still working that out.

Thank you so much for taking the time to share with me. It's not an easy journey.

DotBern

https://alzconnected.org/discussion/comment/203049#Comment_203049

I'm hoping you're right. She never seems happy there. But it's hard to discern if it's her confusion and agitation or her feeling of awareness as you suggest. Thank you for your thoughts.

M1

Dot on the day of our move i had friends come to take her to the new facility in their car while i finished up paperwork and removing the last few items from her room. The director of the new facility had given my partner a tour by the time i got there. She was not happy about being left at the new place, but at the nurse's suggestion we just left and let them handle it.

A year later she still asks what kind of place it is and how long she'll have to stay. Not one word ever about the previous facility. Our party line continues to be that she's there for rehab. She doesn't remember her room if she's not in it, and doesn't remember the layout of the facility (for instance if i say we're going to the kitchen for lunch or going to sit outside, she has no clue where that is). Hard to imagine what it must be like to be that disoriented in time and space.

mommyandme (m&m)

Dot, I’m not experienced with facilities. Sounds like you’re doing a great job advocating for your mom. She’s so fortunate to have you there for her. I am experienced with cameras and a proponent for them. I’m just curious, will her new facility allow cameras? I think they all should and everyone and their cousin should have one or more to watch over their PWDs. I hope they will!

DotBern

https://alzconnected.org/discussion/comment/203103#Comment_203103

Thanks M1. I totally understand what you're saying. The new facility suggested not letting her see me "move" her things. That I arrange for the move during a time a friend or another family member can take her out and while getting her things packed up and moved and set up into her new space and have her brought into the new space. I'm still working through all that in hopes of making her less confused. I do like the idea of letting her believe she's there for rehab or something similar related to her health. Thanks again for sharing! Much appreciated.

DotBern

Hi M&M,

The new facility will allow the camera but without volume. I'm not sure why without volume. I'm happy with being allowed to have the camera. The current place does allow the camera yet this is how I've been able to see the lack of consistent care. At any rate, I, too, believe in the use of the camera, yet I will tell you it causes me more stress that's the downfall. I need to come to terms with the fact that no one will ever take care of her like I do. But I should expect a certain level of care and compassion.

mommyandme (m&m)

You absolutely should expect a certain level of care. As far as the camera with no sound, maybe they don’t want you to talk to her through it, which can lead to more patient confusion. (First hand experience there). I can hear what’s going on through the camera in my phone, but there’s no way to know that by the people being captured. My cameras allow notifications to my phone where the sensitivity of sound or movement can be set. If I put it to a lower setting I don’t get every single notification, which could drive me batty. I can set different types of sounds or images I want to see/hear such as crying or a pet moving about. I can also set a specific area I want it to watch.

Maybe you can work with it so you’re not tortured constantly but still have oversight.

Smilescountry

https://alzconnected.org/discussion/comment/203097#Comment_203097

Yes, we never know. I just know that my Dad senses when the people around him care about him and his needs, and it makes a world of difference in how accepting he is.

fmb

Regarding no sound on the camera, in some states it is illegal to record someone without their express consent.

DotBern

https://alzconnected.org/discussion/comment/203103#Comment_203103

Hi M1,

So much of what you write sounds familiar. My mom does not remember her room and when you tell her these are her things, she wants to pack them up and take them "home". She does not remember the layout of her current place either. It's been over a year. It is very sad to imagine how it must feel to live in their world. The confusion I see in her eyes breaks my heart. My only hope is that she finds some peace at this new place. I may also tell her it's a rehab instead of an assisted living place. It may make the difference in how she accepts it. Thank you.

DotBern

Yes, it could be that Massachusetts has this law. I'm not sure. I've been able to use a camera with sound at her current place but the new place will allow it without sound connected. I am going to forego the camera as it causes me a great deal of stress now when I don't see things happening as they should. I know that no one will care for her the way family would but it makes me crazy to see the few who you know could care less that they're dealing with people who are brain impaired. These people living with dementia can still tell how they "feel" about things or how you make them feel. If I should find the new place isn't living up to all their promises, I will reconsider installing the camera without sound. My children have suggested I don't use it for now.

DotBern

Thanks for the tips on the camera use. I do turn off notifications of movement. It drove me crazy. I check on her night first thing in the morning by viewing "events" and I check throughout the day to see if she's in her room or not as well as how they help her ready for bed etc. I have sound but have never talked to her through the camera. I think she would be frightened to death. The sound isn't perfect, it does have lots of static but I can catch some words here and there.

DotBern

Well, the big move is coming up on Friday. I've had a few discussions with the director who was visibly upset that we were moving…a little too late. She understood and explained they are struggling with good quality staff, it's unfortunate. I feel for all the other residents there. I did try to broach the subject with mom the other day and she was adamant that she'll be going home and no where else. So I dropped the subject quickly. My stomach is in knots but I believe it's for the best. Fingers crossed. Prayers are welcome. Thanks everyone. I'll let you all know how she settles in next week.

M1

hope it goes well. No facility is perfect, but our move was a good one that has worked out much better overall. My problems now are not with the facility but just related to the disease itself.

sknats

Good luck! I moved my mom yesterday from AL to MC. I told her they were redoing her room and she needed to be there for about a month or so since she was getting new carpets, bathroom, kitchen and everything. She was fine until we got there and then became agitated. I am not sure of your mom's mood, but my mom has some agitation, anxiety and paranoia. If yours is the same, I recommend some additional medication that day, perhaps an as needed dosage of anti-anxiety medication. Her old facility was aware of her status and did not give her any additional medication and it did not work out well, to say the least. The executive director, Dir of Nursing and others at the new facility that the old one should have know better and set her up to fail with the transition. She needed to be treated at the hospital with additional medication within a few hours of being there. However, she is doing much better this morning and it has not even been 24 hours.

Please let us know how it goes - I will be thinking of you!!

DotBern

UPDATE ON MOM'S MOVE FROM ONE MC TO ANOTHER

Hi Everyone,

It's been two weeks today since mom's move. She seemed fine with the move. I took her out early along with her sister for a nice breakfast and a trip to the candy store while my husband and cousin helped movers navigate the move and set her up in the new place. I had a diagram of the new place and a list of where things should go. Everything worked out beautifully for the most part. We brought mom's sister back to her nursing home and then I drove her to the new place explaining this is where her doctor wants her to be do to a new medication she is on (which is partly truth). She seemed to understand for the moment. Once there she didn't seem to notice everything moved were her things but that's unusual. She seems to be settling in for the most part but tries to leave with me everytime I visit. I need to have nurses or aides intercept. I always say, I'll be back tomorrow even if I'm not. It seems to make her feel better. I now keep telling her a little while longer and predict this will go on for some time.

The good news is that I am for the most part more impressed with quality of care at the new place. I also decided to forego adding a camera into her room at the suggestion of my children and spouse. They watched how it took it's toll on me previously. I don't like NOT having the camera yet I will wait to see how things go. My two [hone calls were addressed immediately and I was able to have a good conversation on a couple of occasions with the Wellness Supervisor. They were able to add a couple of new items to her care plan, i.e. letting 11 -7 pm shift help her dress and/or shower as she is up dressing herself before 7 most mornings. Understanding that her breast prosthesis does not need to be laundered but wiped and placed into a clean bra when needing changing. No one seemed to "get" that. Otherwise, I think I made a good decision. I like that the aides smile and acknowledge me when I visit. They seem to have a nice way about them with the residents. Mom isn't always partaking in activities except when she wants to. She loves sitting in their dining room looking out over the courtyard. Lots of bright sunny windows in the room. So they let her be. I've noticed a couple of other residents joining her. So I believe she is content.

Unfortunately, I tested positive for Covid on Monday and have been unable to visit till tomorrow now that symptoms have subsided. I prayed she would not "catch it". She did not. I, too, had no idea where I picked it up from. Guess that's the way of the world now. I do think my time away has probably helped her somewhat to adjust. Thank you all for your positivity and support. I appreciate all of you and what we all deal with on a daily basis. We are warriors for our loved ones, even when it's hard. God bless you and your LO's.

concerned_sister

Glad to hear your mom isadjusting well. Here's to a speedy recovery for you.

M1

Yes that's all great news Dot, glad it went well. And glad you are recovering uneventfully.

psg712

https://alzconnected.org/discussion/comment/206372#Comment_206372

Oh boy. The breast prosthesis. I kept finding my mom's prosthesis in random places in her room - on top of the dresser, on the back of the toilet tank ... plus once or twice it was in the laundry basket, in its bra. I was afraid it would get tossed into the washer and dryer and ruined. So now it is in its storage box, in the closet which the staff keeps locked. Mom has not missed it.

I hope that things continue to go well with your mom's move!

M1

I have to say, i wondered too whether maintaining a prosthesis is worth it beyond a certain point.. Most of the women at my partners MC facility go braless. Maintaining comfortable exterior clothing seems to be trouble enough.